Just diagnosed

Hi Nell54 and welcome to this friendly and supportive group, although I am sure you would rather not have to be here. The first thing to bear in mind is that bladder cancer can be treated successfully and many here can tell the tale. We know what a shock a diagnosis can be and the early days of uncertainty and not knowing can be the most stressful. Good to know you have had your surgery. Once you get your results and a confirmed diagnosis a treatment plan will be put in place. Try not to google as there is a lot of misinformation and confusion out there. Macmillan have produced information on BC which you can see by clicking HERE . Lots of experience so feel free to ask anything. Best wishes.

Thank you, that's very kind and helpful. I only was told (because I asked!) it was cancer literally 30 minutes before I went into theatre  - the cystoscopy and pre op nurses were noncomittal. The staff were fabulous but I asked how soon I could start back on the indoor bike and was told give it a few days. I expected to bounce back quickly and have been doing too much! Trying to be sensible but find it hard to achieve a balance between getting back on my feet and taking it easy. Plus I feel guilty having to rely on my partner so much  -he's 81 but very fit, but all the same. There's also the feeling that, you hear about people with cancer who are amazing, or brave, and I don't feel either, more of a nervous wreck at present. You're supposed to be positive and cheery but not me.

Anyway, whinge over, sorry! Hope it's OK to dump all this here, I don't want to burden him with a lot of it. Thanks again. 

What a shock for you. I think we all underestimate that the body needs time to heal from an internal wound, as well as from the anesthetic. Just pace yourself, drink plenty and rest when you need to. 

We are all familiar with the anxious wait for results, too. As rily says, BC is very treatable, often even curable. Don't be surprised if they want more tests done, just to ensure they have a full picture, before advising on the most appropriate treatment option(s). Hope all goes well for you.

Hi Nell54

I am just slightly ahead of you in the initial routine. I waited about 4 weeks before I had it confirmed that I have cancer, the consultant seemed to know by just looking at it in the initial cystoscopy. It was a long wait but I wish I had accepted that these tests take a while sooner and worrying didn't make it any quicker. I know the worry you are going through and the shock but wanted to tell you that I had my meeting with the Urology Consultant last Thursday. A Macmillan nurse also attended the meeting and after the she took myself and my partner into another room and explained everything they would be doing going forward. She gave me books and leaflets and also a card with her details so I could contact her. 

I had to wait a little longer for dates as they were waiting for confirmation for a chest CT from another hospital who double checks everything, I believe it was to ensure all was well there before starting treatment. My Macmillan nurse phoned me yesterday to confirm all is well and with the start date of my BCG treatment. I expected it to be quick as the consultant had said ASAP, they had also pencilled in my dates before hand on the day of the meeting. My first date is May 19th, I guess the wait depends how busy they are with other patients on the list. 

Since the first meeting I have been trying to be more positive. These guys know what they are doing and we have to have faith. It's something we have to go through, the waiting is the worst thing, I know from a previous cancer scare last year that worrying didn't help me. I have been using distraction techniques to keep my mind off it all.

When we saw the Macmillan nurse she gave me a small card that is for extra support, a holistic needs assessment. There will be a code to get into the system to fill in extra details about yourself, your worries, other health problems, your interests and suggestions of other support that may help. I filled this in, it didn't take long, and the nurse rang me after to go through it. This was a big help, it made me think about the things I was worried about. I discovered by then that there wasn't much for me. The nurse said it also helped her get to know me and that she's not starting with a blank canvas, I am waffling on but I wanted to give you an insight of what will likely be happening next. 

Maybe I am weird, but I can't wait to get started with the treatment now, it's all steps to making sure the cancer doesn't come back and I'm all for that!! 

Have a lovely weekend and try not to worry too much, try to find things to do as a distraction, I know it's hard but once you are through this stage it'll all start happening. x

You are going through what a lot of us have faced: one minute your body is fit,  healthy and something to be proud of and the next it feels as though it has let you down and you're wondering if you'll ever be able to trust it again.

Treatment for cancer is tough, mentally and physically, no matter what you need to have done. But there is light at the end of all that. Most of us here have experienced it.

In my case I decided to carry on putting one foot in front of the other. Resting when I felt like it and slowing if I had to, but just keeping on until the point where treatment ends and we are under regular review.

Every so often we remember what things were like before the cancer as well as during it but I have found it helpful to enjoy life at whatever point I reach and look forward to better days in future. 

It has worked well for me and my family and we have all learnt a lot, plus I have now been clear for over 3 years. 

I hope you will feel the same.

All the best,

Latestart

Thank you for that. It has all been a bit of a shock to go from a CT scan to a cystoscopy to be told surgery and only at that point for them to say the actual word,just before the surgery. I'm still trying to get my head round it, as it's only 10 days since the TURBT. I know my next appointment is May 20th and will find out details, next steps etc so in limbo till then. But good to know the support outline  - don't know if I automatically get a MacMillan nurse? I'm in Scotland so the systems can be different. 

I have issues with anxiety generally so that doesn't help! I am trying to keep occupied but at the moment am still really tired so can't get out and walk much which is just not me! 

Thanks for your good wishes. 

Thanks for that. I'm not used to my body not doing as it's told! I really miss my exercise routine and walking every day but am trying to be patient (not known for that...)

Glad to hear that you have been clear for 3 years, and long may it continue!

Thank you, I'm still building back up (keep having foot problems which have slowed things down) but am getting there. I have a park next door so have kept walking throughout, using poles for balance and speed, even just after my TURBT and later my bladder removal as well as more recent foot problems.

And also doing Pilates at home for flexibility. Maybe you could do a stripped back walking route too, I didn't miss much after the TURBT, perhaps because I didn't know I had cancer until the feedback meeting with Urology. 

All the best,

Latestart

Hi Nell54, it sounds like you are doing your best to quell the nerves, it's not easy waiting for so long.

I guess all hospitals are different, I was introduced to my Macmillan nurse straight after the cystoscopy. Having had bowel cancer last year I'd seen images of cancer and to me it looked like cancer on the screen and I could tell by the consultants change of mood too. The nurse was really nice and gave me some paperwork at that point. I hope you are assigned a nurse, it is nice to know there is someone to call if you have any questions. I know what you mean about being anxious, it isn't easy. Before my TURBT there was another lady waiting for hers and she said her brain had gone to mush, I related with that, I've also become more tired and forgetful. I think that must be part of the shock of it all.

Take care x

Hi Jill,

You were provably more attuned to body language etc than most of us. I was totally clueless even though the doctor doing the cystoscopy showed me what looked like a big verruca on the screen (or Dennis the Menace's hair).

You're right that every hospital does it differently. In mine (big London teaching hosp) they didn't tell anyone until the face to face meeting. We have Cancer Nurse Specialists employed by the hospital not Macmillan nurses. I met one at the one stop shop - he took a detailed history, Sent me for CT scan and then cystoscopy. And I met him again weeks later after the TURBT with the consultant who told me it was cancer. The reason it takes a while after the op is that there needs to be time for pathology check of tissue removed and then a multidciplinary review.

And after that I was passed to oncology and another part of Urology that does robotic bladder removal. 

Of course I really only understood all of that long after that meeting when eventually I realised how the doctors and the CNSs fitted together.

It's like getting a new language while trying to keep one's brain functioning despite everything.

All the best,

Latestart